Social Impact Heroes: Why & How Jennifer McNary of Fulcrum Therapeutics Is Helping To Change Our…

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Social Impact Heroes: Why & How Jennifer McNary of Fulcrum Therapeutics Is Helping To Change Our World

Nothing worth doing is easy to do. When my sons were young, I truly thought the barrier to a treatment was science but when the science was good, we faced regulatory barriers. We helped address the regulatory barriers and quickly realized that access and reimbursement challenges still existed.

As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Jennifer McNary.

Jenn McNary is a mom of six based in Saugus, Massachusetts. After her two eldest sons were diagnosed with Duchenne muscular dystrophy and her youngest son with primary immune deficiency, she became their advocate and eventually began working professionally in the rare disease advocacy field. Today — 20 years later — she is a nationally-recognized activist and was recently appointed Executive Director, Head of Patient Advocacy and Engagement at Fulcrum Therapeutics, a rare disease company developing therapies for facioscapulohumeral muscular dystrophy (FSHD) and sickle cell disease (SCD).

Thank you so much for joining us in this interview series! Can you tell us a story about what brought you to this specific career path?

When I was 21, my two sons (aged three, and three months at the time) were diagnosed with Duchenne muscular dystrophy. I really became engaged in the drug development world when my son Max was nine and enrolled in what turned out to be the clinical trial leading to the first drug approval for the treatment of DMD. A decade ago, patient input was rarely collected in the context of clinical trial design, endpoint selection and regulatory review. I was in a unique position, watching my son Max stabilize while his older brother Austin continued to decline because he didn’t have access to the trial drug. I got a front row seat to the clinical trial process and its ups and downs, ultimately co-initiating a grassroots drug approval campaign called “The Race to Yes,” which helped to pave pathways that allowed advocates to engage with regulators and drug developers — to pull up their seat at the table.

I was once coined a “fierce mom” by the FDA, and I would like to think that I took that label and internalized it as I eventually formed a small consulting firm and began to help raise the voices of other patient populations. In September of 2021, I was offered an internal position with one of my longtime clients, Fulcrum Therapeutics. I had become so connected and attached to the patients we serve at Fulcrum that I decided to join as the organization’s Executive Director, Head of Patient Advocacy and Engagement.

In addition to my consulting company and working with Fulcrum, my son, Austin, and I co-founded One Rare. This nonprofit organization supports young adults living with rare diseases of all kinds through education and support. With all the innovation and treatments now available to many people with rare diseases, people like my sons are living longer. It is our responsibility to look for new ways to support these individuals.

Can you share the most interesting story that happened to you since you began leading your company or organization?

I think something interesting has been how similar the experiences are across different disease areas. For example, I am currently working in both the rare disease and mental health spaces, and have been shocked that I am having the same conversations with advocates in both areas. Some of the common themes are equity, access to care, and stigma. I think we would be smart to continue to have broad multi-stakeholder conversations and move away from working in silos.

Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?

Following on the “interesting story” above, one mistake I made early on was thinking that I completely understood patient experiences across the spectrum of the rare disease community. While there are common threads between the different conditions and patients, I have learned that if you know one patient’s story, you only know one patient’s story. This is why I talk to as many people as I can when I am trying to understand a patient’s journey. It is impossible to draw conclusions until you fully immerse yourself in the community.

Can you describe how you or your organization is making a significant social impact?

Wearing my non-profit hat for a moment, I would say that our impact creates a ripple that can lead to a wave of change. I really enjoy being a connector and I am most proud of the feedback that One Rare serves as a conduit bringing rare patients, solution providers, biotech organizations and mentors together in a very impactful and meaningful way. It is my hope that others will see what we are doing and build on it!

Can you tell us a story about a particular individual who was impacted or helped by your cause?

I can think of a number of situations where I am proud of what I do every day, but my favorite is watching an advocate’s “birth.” Over the past couple of years, I have had the pleasure of working in an ultra-rare disease community and meeting a sweet and dynamic grandmother. She saw a need in the community and went on to found a non-profit for her grandchild’s condition, bringing together a small group of parent advocates and engaging with the FDA and policy makers, all while raising awareness for this very difficult and untreated condition. I am always so proud of the people who step up when there is unmet need and I consider these folks lifelong friends because of the work we are able to do together.

Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?

I hope that the COVID-19 pandemic has shown the general public a snapshot of what life as a rare disease patient and caregiver looks like. The desperation, the fear, and lack of accurate information or abundance of misinformation all present in both the COVID pandemic and in the rare disease life cycle.

I hope our government and leaders will take the urgency they felt to develop treatments and solutions for the pandemic and transfer it to their attitudes towards rare diseases in order to solve issues important to the rare community. I hope we learned from the pandemic and continue to offer solutions like remote schooling, telehealth options and flexible working environments.

I would love to see politicians focus on our rare young adults by helping provide caregiving structures housing and access to medical care and therapies.

I am only asking for a few things!

How do you define “Leadership”? Can you explain what you mean or give an example?

True leaders have the ability to see the big picture and facilitate movement towards their goals. I believe that leaders are born, not made. They are driven by something meaningful.

I also believe that leaders emerge amidst chaos, and I think the small group of DMD families that came together to build The Race to Yes is absolute proof of this theory.

What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.

Nothing worth doing is easy to do. When my sons were young, I truly thought the barrier to a treatment was science but when the science was good, we faced regulatory barriers. We helped address the regulatory barriers and quickly realized that access and reimbursement challenges still existed.

There is never a time when the work is “done,” so you just have to show up every day and do what you can with the hours you have. My to-do list is never blank, so I have decided to write absolutely everything on the daily list (including yoga and a shower!) so that I can have the satisfaction of crossing them off.

Everyone is human! I used to have such anxiety before speaking with a CEO or public leader but I have learned that most people are approachable and appreciate authentic connections. The sooner you realize that your story has value, the sooner you begin forging those real relationships.

There is no such thing as competition. The non-profit and consulting/biotech spaces are richer and healthier when more people contribute value. I am always willing to share and make room for anyone who also seeks to make a difference. There is enough work for everyone.

Everyone suffers from imposter syndrome. Use it to keep you grounded but don’t let it consume you. I once spoke with the CEO of a large company who had just given a speech at the same event I had. He let me know that despite his external persona, he always wondered if he “belonged” on the stage. Those are the same thoughts I have. So the answer is yes, you belong.

You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂

I am really passionate about access. When I say access, I mean that whatever a patient needs is readily and easily accessible to them. This entails equipment like handicapped vans, accessible showers, wheelchairs, even adaptive sports equipment like skis and all-terrain wheelchairs. This also means drug therapies, caregivers and specialist healthcare. Essentially, I believe that people living with health conditions should have automatic access to everything that can enhance their quality of life with simple paperwork, no denials and without hours of headache-inducing phone calls. Families living with challenges have enough going on. We should solve this issue so their energy is spent LIVING!

Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?

“Nobody can do everything, but everybody can do something”

I am a single mom with four biological kids, three of whom live with significant health challenges. I also became a foster parent last year and have two little girls as long-term placements but also take in some of the harder-to-place kiddos, even for a night. I can’t completely change those kids’ lives, but sometimes just providing some love and support for one night makes a difference. Similarly, in the rare disease community, it is impossible to help everyone, but if I can make an impact on one patient, it matters. The patients and caregivers I come in contact with every day are changing the world one action at a time and if you really watch what’s happening on a micro level, your faith in humanity can be restored even when the world seems so hard to live in.

Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂

I don’t like small talk, so I would always choose decision-makers. FDA Commissioner Robert Califf, Dr. Janet Woodcock, Dr. Peter Marks, or the heads of the Centers for Medicare & Medicaid Services (CMS) or United States Department of Health and Human Services (HHS), or dinner with all of them! I don’t have a lot of free time, but I would be happy to buy the first round of drinks and chat about important policies 😊

How can our readers follow you on social media?

I’d be happy to connect with readers on LinkedIn.

Thank you so much for the time you spent doing this interview. This was very inspirational, and we wish you continued success.

Social Impact Heroes: Why & How Jennifer McNary of Fulcrum Therapeutics Is Helping To Change Our… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.